Charting the COVID Long Haul Experience - A Longitudinal Exploration of Symptoms, Activity, and Clinical Adherence
Bibliographic record
Abstract
COVID Long Haul (CLH) is an emerging chronic illness with varied patient experiences. Our understanding of CLH is often limited to data from electronic health records (EHRs), such as diagnoses or problem lists, which do not capture the volatility and severity of symptoms or their impact. To better understand the unique presentation of CLH, we conducted a 3-month long cohort study with 14 CLH patients, collecting objective (EHR, daily Fitbit logs) and subjective (weekly surveys, interviews) data. Our findings reveal a complex presentation of symptoms, associated uncertainty, and the ensuing impact CLH has on patients’ personal and professional lives. We identify patient needs, practices, and challenges around adhering to clinical recommendations, engaging with health data, and establishing "new normals" post COVID. We reflect on the potential found at the intersection of these various data streams and the persuasive heuristics possible when designing for this new population and their specific needs.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.004 | 0.011 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".